Creating online dementia care material in Hindi: my experience so far

For the last few months I have been making Hindi material for supporting dementia care and uploading the material to make it available online. Here’s a short blog entry on my experience so far.

The background: Over a year ago I started worrying about the paucity of online (and print) material in Indian languages for dementia caregivers. This “worry” was active enough for me to wonder what I could do about the lack of material. My concern was spurred after someone in Madhya Pradesh contacted me – he was using Internet on his mobile and wanted material in Hindi so that he and his family could better support an early-onset dementia patient. I helped him through phone calls and by sending across some material I had. However, I felt concerned about how difficult things must be for someone like him who wanted support. Around July/ August last year I started exploring options for creating Hindi material myself. A few months later I made my first Hindi video and placed it on youtube, and in December I shared my thoughts and experiments in a 4-part blog entry (For part 1 of this series, click here: Adventures in Hindi Part 1).

Creating material in Hindi was not easy work. I did not have conventions to follow about the type of Hindi and the way dementia is explained in Hindi; I had to base my decisions on approach and style on the experience I’d had providing help in Hindi over the phone and in person, and, of course, my instinct as a caregiver and a volunteer. Typing posed its own challenges, as typing in Hindi is done using transliteration, so one has to remain alert about when this transliteration messes up spellings. Plus, of course, my Hindi needed brushing up.

One more deterrent was knowing that creating online material in Hindi was essentially a gamble. I knew people checked online for cricket scores and gossip about superstars in Hindi, but I had no idea whether people were looking online for information on dementia in Hindi. Even if there were such people, I had no idea how to let them know about my site so that they could check it out for at least some pointers to help them.

But I can be stubborn when I want to, and so once I decided to try my hand at it, I continued to create and upload stuff in Hindi, let some people know, and leave the rest to word-of-mouth, google, cross-links….

Here’s the current status of my Hindi work online: I have created a full-fledged website in Hindi on dementia care (Dementia Hindi ) and also uploaded four videos on youtube on wandering, helping patients with daily activities, communication, and understanding the relationship between dementia and Alzheimer’s (they are also combined into a convenient playlist: click here: Playlist: Hindi dementia/ care uploads). My latest video, on dementia and communication, was uploaded just a few weeks ago. Here it is:

So, what’s been my experience so far?

I’m relieved (and happy) to say that people have been visiting the Hindi website and viewing the videos. Not in droves, no, but enough for me to feel that the effort was worth it. Especially so as some visitors are from far-away cities I have no contacts in, such as Jamshedpur, Lucknow, and Indore in addition to the expected Delhi and Mumbai. Not all visitors are from India, interestingly, and apart from places like the USA and UK, I’ve also had visitors from the Nepal, Qatar, UAE and others 🙂 Some persons have even contacted me using the contact form, sending their queries in Hindi (typed using Roman script). (I responded the same way).

The videos have been viewed, too. Anyone who has checked out youtube for dementia information in Hindi would have noticed that available material (other than mine) is usually dubbed interviews, and some translated authoritative informational presentations. Overall, the list is so small it takes barely a couple of screens. So when I uploaded my videos, I had no clue whether anyone would even reach them. But of my 4 videos, 3 have been up for some months, and each of them has a viewership of over 200. Is that good enough? Is it bad? What number does one compare it with?

It is not as if there is a wide choice of Hindi material and I have a baseline to compare it with 😦

The way I see it is, this viewership is encouraging enough for me. It is far more, incidentally, than zero, which is what my viewership would have been if I had not put up the videos. Even without any direct touch with people/ publicity, even without press releases and conferences declaring the presence of this material, people reached it and read/ viewed it. And hopefully benefitted…

The beauty of online material is that once it is up and available, it remains available without additional effort, and so more and more people can view it as and when they become aware of it or get a link or locate it in a search.

My summary so far is that yes, there seem to be persons who will read material or view videos in Hindi (and possibly other Indian languages) if these were made available. I think catering to this potential audience is just not being taken as seriously as it deserves.

I’d also like to share that I sometimes meet volunteers in India who feel that there is already enough online material on dementia care and nothing more needs to be done on this front. These volunteers are often part of forums where they regularly exchange links to the same articles, recommending them to each other (not always reading them, but assuming others would benefit by doing so).

I feel these people haven’t considered a number of aspects. For example, they may not have considered whether the available material is:

  • understandable and usable by audiences in India (fitting into the cultural context)
  • in languages that people can read/ understand )
  • with links in forums such people can access )
  • accessible on the type of online platforms such audiences use )
  • accessible to people not in metros )
  • accessible to people who don’t have online access/ find it expensive)

I could expand the list into a much longer one, but I’m sure you get the point 🙂

I remember a comment one person made after he read some of the standard caregiver material he’d downloaded from one non-Indian site; he said he’d shown it to his family but they discarded it because the persons it showed were not Indians and the houses they showed were not middle-class Indian and the methods they described were not directly usable in India. (Like bathing tips that assume baths in tubs, I suspect) “We are not like these people; their ways won’t work for us,” he told me. His comment reinforced my impression that a good caregiver manual written by an Alzheimer’s support organization in some other country cannot always be used directly by all sections of people in India.

So, in my opinion, there is not enough suitable material in India given the diversity of our people, the sheer number of languages, the geographical and economic spread, the enormous awareness gap to bridge and what not. The gap between what is needed and what is available seems huge to me.

And here is my request to you, whether you are a volunteer or a caregiver who has experiences to share: if you are comfortable enough to create material in an Indian language — whether just talking of your experience, or sharing some structured material or some data — please do consider it. The online space is open and waiting for you.

Maybe the material you create or the video you make will not go viral. There may be no award to be won. There may be no appreciation/ brownie points from peers. But the one person who reaches your material could be someone whose life will be made different by reading or hearing what you have to say.

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Confused, disoriented elders who wander: what can be done, and a video with tips.

A few days ago I heard of an incident that had an unfortunate hum of similarity with many such incidents one hears of: an elder was found dead in a lake near his home; he had probably slipped in, but no one really knew. I was told, “He had been wandering for months. What could they do!” The way of speaking implied that such tragedies are inevitable once someone begins wandering.

We’ve all heard stories of some seniors who start getting confused and disoriented as they grow older, of their wandering off looking for homes demolished decades ago, looking for people and places that no longer exist, wanting to do things like go to office when they have retired years ago. We’ve heard of such wanderers being found after a few days, injured, starved, clothes tattered, with no one knowing what happened in the interim.

We’ve heard of families still waiting for the wanderer to return.

And that occasional sentence, What could the family do! uttered as a statement of hopelessness, and not as a request for suggestions.

Yet, while the tendency to wander may happen, wandering and tragic consequences are not inevitable. There are things that can be done.There are ways to reduce the chances of such wandering, and there are ways to improve the chances of finding a person if he/ she wanders. These are not fail-safe ways, they may not always work, but a reduced probability is worth it, no?

The problem of wandering is so common that I find it strange that we don’t have a more vigorous discussion on tips and tricks for it. Somehow, I suspect that till someone close to us wanders, we assume wandering only affects others; we don’t think it could happen close enough to hurt us. Perhaps the problem doesn’t seem immediate enough to engage us. But the problem of wandering is best tackled by reducing the chance of someone wandering, by ensuring they always carry an identity, and by having quick ways to locate people who wander.

And here’s the thing: we cannot prevent wandering if we only read tips about it after people wander. Tips must be available widely so that when an elder acts confused and seems prone to wander, family members don’t shrug helplessly, saying “What can we do if she wanders!” in a way that shows defeat. Instead, they genuinely ask around, “What can we do if she wanders?” because they know they can get suggestions and solutions.

When my mother started getting confused and disoriented enough to start wandering, I had a tough time. I tried explaining to her that she should not wander; it failed, because she did not see herself as wandering. She was trying to see who has rung the doorbell or walked past in the corridor. She had stepped out for some work, except that she forgot what it was. I would dash out to catch her before she hurt herself (she had balance problems) or got lost, and every time she would get angry at me for stopping her from what she wanted to do. (Looking back, I could have found better ways to distract or persuade her). I tried to make her carry a tag; she got angry again. Once, I asked a neighbor to sit with my mother for around ten minutes as I caught up with an outside errand; I returned to find the neighbor had left my mother alone because “Auntie promised me she would not wander.” My mother, meanwhile, had wandered.

So I started making sure she was never alone at home, and I would lock the door from inside. My mother complained to some friends who then scolded me for mistreating her. “I would not like to be locked in,” one elderly man said. “My children would not dare to do this to us.” This was after my mother’s diagnosis and I explained that she got confused, she had a balance problem, even a small accident could cause a fracture, or she could get lost. He assumed I was some control freak out to trouble my mother (too many TV serials with bad children?) One neighbor even egged my mother to sabotage my efforts and demonstrate her “independence” by walking out, so much so that my mother would sit on the sofa waiting for the moment that the door was unlocked so that she could dash out of the “jail.”

BUT: No one suggested anything I could do to reduce the wandering 😦

The funny (sad?) part is, all these persons who were critical of my (unskilled) attempts to keep her safe, all of them had known of some wandering episode of someone or the other. They knew some people wandered; they just didn’t think my mother was the “sort who wandered” even though she wandered. Because, “Auntie seems fine” or “Auntie used to help my daughter in her studies” or some such thing.

We definitely need more recognition of the fact that people who seem normal in short interactions may also wander.

And we need to get cracking on sharing tips so that when seniors start showing some confusion, some disorientation, families know of these ideas and can implement what is suitable, so as to reduce the chance of an actual wandering episode or tragedy.

An example: A few years ago, a lady wandered because of a door left unguarded for a few minutes, but the family had stitched a label with the name and phone number at the back of her nightgown, and a passerby called within minutes that he had spotted a lady wandering; she was brought back safely. One small action, one small tip, and look how it averted a tragedy! When I heard of this incident, I remembered my futile attempts to make my mother pin an identity to her pocket and her angry protests; I had not thought of stitching a label at the back of her nightgown, at some place she would not notice it.

Yes, we need these tips pooled and talked about.

Two months ago, prompted by my concern about wandering, I had prepared a video with tips on wandering, and also written a rambling blog entry about my concern for wandering here: Diverse responses, networks of concern and support, problems like dementia and wandering. Recently, I created the Hindi version of the wandering video to make the tips and suggestions accessible to a wider audience. I created the video as part of my work on dementia, but the tips would apply to any confused/ disoriented person

This, friends, is my way of adding to the pool. But information can reach families that could benefit from it only if people spread the word. It may seem like a small thing not worth doing–why bother, let others share the link–but perhaps one person you tell, one tip they employ might prevent a tragedy. Or they may get inspired and think of some more tips and share them around. It could begin a conversation, the sharing of a concern that would avert tragedies. And frankly, none of us is immune from such tragedies…

The Hindi wandering video is here: (If the player does not load, you can see the Hindi video on youtube).

The English wandering video is here: (If the player does not load, you can see the English video on youtube)

And if you don’t really believe that wandering is a real problem that it hits people unawares and can lead to tragic consequences, have a look at this presentation by Sailesh Misra of Silver Innings which includes real life examples (identities changed) of wandering episodes in India: Wandering and Missing Senior Citizens: Why does this happen and what to do then

And if persons do wander and get lost, here is another link from Sailesh you may find useful: Blog for missing senior citizens.

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